CCHE 57357 Patient & Family Bill of Rights & Responsibilities

June 4, 201114,559 ViewsNo Comments

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The Patient and Family Bill of Rights and Responsibilities addresses the collaborative partnership with our patients and families that we at CCHE believe is necessary to achieve the highest quality care for our patients who have unique needs because of their cancer diagnosis and because they are children and are essentially helpless.

Child’s Bill of Rights at CCHE 57357

As a patient and part of the family of the Children’s Cancer Hospital of Egypt 57357, I have the right:

To be treated with love and respect by everyone in the hospital no matter what my age, skin colour, religion, rich or poor.

To be called by my name and not a number or diagnosis.

To be as pain free as possible and have any other cancer symptoms and/or treatment side effects looked after in the best way possible.

To be listened to seriously when I am afraid, mad, or happy and to have someone answer me when I ask for something.

To know the names of all the people who are looking after me.

To have people be honest with me about my disease, treatment, admission, discharge and anything else and to speak in simple language that I can understand.

To be given choices about treatment time, tests, etc. as long as it doesn’t cause a problem with my treatment.

To have all procedures and treatments explained to me honestly and openly if I ask and at my age level.

To have my nurse and doctor and pharmacist make sure I am getting the right medicine at the right time in the right way.

To have my daily routine stay as normal as possible. To be able to have quiet times and sleep without being interrupted, to be able to keep up with my schoolwork in the hospital ,to have my mother or father with me at all times, and to have my brothers and sisters and other family come to visit when I miss them and need them. Note: the hospital may establish reasonable restrictions upon visitation, including restrictions upon the hours of visitation and number of visitors for the safety of your child and others because of their compromised immunity.

To be able to have someone give me a bath, take me to the bathroom, help me when I am vomiting or in pain, change my dressing, take me for a walk, play with me.

To know when I am supposed to not eat before tests or treatments so I can eat before that time.

To know my illness and my medical information is between me, my family, and the people caring for me and that it’s no one else’s business unless I say so.

To not have people whispering about me over my bed or out in the halls unless I know what’s happening, and not to have people talking about me as if I weren’t in the room.

To not have my hands or other parts of my body tied unless it is to protect me.

To have people who are looking after me give me safe, intelligent care like using good hand-washing, and infection control.

To have the hospital safe and clean so that I do not get sicker or have an accident.

To leave the hospital as soon as possible with instructions from my caretakers for my family and me on how to keep me healthy at home.

To have educational material about my sickness and treatment that my healthcare giver will have explained to me.

To have someone tell my family everything that is happening to me and to respect their opinions and beliefs and explaining it in language they can understand.

To be told what the rules of the hospital are so that I can follow them to the best of my ability.

Patient/Guardian Rights at CCHE 57357

As a parent or guardian of a child with cancer and part of the family of Children’s Cancer Hospital of Egypt 57357, you have the right to:

Access to screening activities that facilitate early cancer detection, including the option of genetic testing and counseling.

The full spectrum of treatment options provided in the most appropriate setting for the management of the specific cancer and symptoms, with active participation in treatment decision making in an informed manner. These treatment options include but are not limited to surgery, radiotherapy, chemotherapy, biotherapy, hormonal therapies, marrow and peripheral blood stem cell transplant, complementary therapies, rehabilitative therapies, and psychosocial services.

Access to a center that is composed of the primary care pediatrician, pediatric medical sub specialists, and pediatric surgical specialists—hematologists/oncologists, surgeons, urologists, neurologists, neurosurgeons, orthopedic surgeons, radiation oncologists, pathologists, child life specialists, and diagnostic radiologists. These physicians, pediatric nurses, nurse specialists, social workers, pharmacists, nutritionists, and other allied health professionals serve as a multidisciplinary team committed to the care of the child or adolescent with cancer.

Be the central member of the healthcare team who practices family centered care and who values your partnership in the treatment planning and facilitation of care for your child.

Individual cancer diagnosis, treatment, and follow-up care in terms that can be understood, including unbiased analysis and interpretation of data, assistance in interpreting information relevant to medical status and treatment, and ample opportunity to ask questions and to be able to participate fully in the treatment decision making for your child as a partner of the healthcare team.

Supportive therapies that help to prevent and decrease the side effects of cancer treatment such as superior control of fever and infection, pain, nausea and vomiting, mucositis, and poor nutrition, as well as psychological support, adequate education about all medications, possible side effects, resources for immediate response, and advice when questions arise.

To have emergency care given without delay.

The right to give informed consent for any procedures or treatments which require informed consent except for emergency situations.

Long-term follow-up that focuses on health promotion, prompt detection and of cancer treatment recurrence, and the evaluation and identification of physical and psychosocial effects of cancer and its treatment.

Palliative care modalities that improve quality at the end of life, with a focus on symptom management, exemplary pain control, psychosocial support for patients and their families, hospice care, and bereavement counseling. This care must be provided in a manner that respects the individual’s cultural, spiritual, and ethical needs.

To expect staff to be considerate of your time and to avoid unnecessary discomfort for you and your child.

Education in your language about cancer risks and lifestyle changes that influence the incidence of cancer.

A formal program for cancer education in your language for the family and instruction on self-management.

Request or refuse treatment of your child, to the extent permitted by law. However, you do not have the right to demand inappropriate or medically unnecessary treatment or services. You have the right to remove your child from the hospital even against the advice of physicians, to the extent permitted by law.

Be advised if the hospital/personal physician proposes to engage in or perform human experimentation affecting your child’s care or treatment and that after listening to detailed explanations and rationale that you have the right to refuse to have your child participate in such research projects.

Reasonable responses to any reasonable requests made for service.

Have personal privacy respected. Case discussion, consultation, examination and treatment are confidential and should be conducted discreetly. You have the right to be told the reason for the presence of any individual. You have the right to have visitors leave prior to an examination and when treatment issues are being discussed. Privacy curtains will be used.

Confidential treatment of all communications and records pertaining to your child’s care and stay in the hospital.

Receive care in a safe setting, free from mental, physical, sexual or verbal abuse and neglect, exploitation and harassment. You have the right to access protective and advocacy services including notifying government agencies of neglect or abuse.

Receive care in an environment that preserves dignity and contributes to a positive self image for both you and your child.

Keep and use personal clothing and possessions, unless this infringes on other’s rights or is medically or therapeutically contraindicated (as appropriate to the setting or service). You have a right to sufficient storage space to meet personal needs.

To have your child free from restraints and seclusion of any form used as a means of pressure, discipline, convenience or retaliation by staff. In some instances, a child may be restrained to prevent harm to treatment lines such as IV and respirator tubing. Isolation may be required to protect your child from infection or to protect other children from infection. In all instances, the reasons for these precautions will be thoroughly explained to you and your child.

Reasonable continuity of care to:
-know in advance the time and location of appointments as well as the identity of the persons providing the care.
-be informed by physicians and other caregivers of available and realistic patient care options, when hospital care is no longer appropriate.

Be informed by the physician, or a delegate of the physician, of continuing health care requirements and options following discharge from the hospital. You have a right to be involved in the development and implementation of your child’s discharge plan.

Know which hospital rules and policies apply to your conduct while your child is a patient.

Have access to telephone and mail services and other forms of communication at reasonable cost.

Designate visitors of your choosing, whether or not the visitor is related by blood or marriage, unless:
- No visitors are allowed because of restricted visiting hours, infectious precautions.
- The facility reasonably determines that the presence of a particular visitor would endanger the health or safety of a patient, a member of the health facility staff or other visitor to the health facility, or would significantly disrupt the operations of the facility.
- You have told the health facility staff that you no longer want a particular person to visit.
Note: the hospital may establish reasonable restrictions upon visitation, including restrictions upon the hours of visitation and number of visitors for the safety of your child and others because of their compromised immunity.

Examine and receive an explanation of the hospital’s bill regardless of the source of payment.

Exercise these rights without regard to sex, economic status, educational background, race, color, religion, ancestry, national origin, disability, sexual orientation or marital status, or the source of payment for care.

Patient and Family Responsibilities at CCHE 57357

The child and his/her family are responsible for:

For providing the most accurate and complete information about present complaints, past illnesses, hospitalizations, allergies, medications and other matters relating to your or your child’s health that you can.

For reporting unexpected changes in your child’s condition to the responsible care giver.

For letting hospital staff know when you don’t understand the treatment plan or what is expected of you or your child.

For complying with the treatment plan that you and your child develop with your child’s doctors. This may also include instructions from nurses, pharmacists, physiotherapists and other members of the healthcare team as they carry out the treatment plan and orders from the doctor and enforce applicable rules and regulations.

For your actions or the actions of your child if you or your child refuse treatment or do not follow the practitioners instructions.

For following the Children’s Cancer Hospital of Egypt 57357 rules and regulations of patient care and conduct.

For being considerate and respectful of the rights of other patients and staff realizing that you are part of the Children’s Cancer Hospital of Egypt 57357 family.

Help to control noise, adhere to the non smoking and the visitors’ policies for the well being of your child and others.

Helping to maintain the high standards of the hospital building and garden by following hospital policies, disposing of garbage properly, notifying staff of breakage or things needing repair, and helping to keep the hospital clean.

Being respectful of the hospital property and other person’s personal property.

As part of the Children’s Cancer Hospital of Egypt 57357 family, you and your child will treat everyone with respect and trust regardless of their gender, economic status, educational background, race, color, religion, ancestry, national origin, disability.

To appreciate and help to protect the hospital knowing that millions of people have made this state of the art hospital possible for the treatment of your child.